New chemo treatment problems
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Julie…..I can’t believe all you are having to deal with. My heart goes out to you. Julie, I am of the believe that you should not hold back from returning to the hospital if that is what you are contemplating. There is so much going on and you should not have to guess as to why you have certain symptoms.
I am wondering, Julie, what where your tumor markers prior to your surgery nearly 6 months ago and what was the latest reading? Also, your toe infection, has it been resolved? Are you taking antibiotics?
Hugs and love,
MarionJulie I wish I could tell you something to make you feel better but honestly, girl, I have never heard of chills coming every day at the same time. That just would not be right and wondering if you have called the ONC about it. Also have you tried using a heating pad? Another suggestion is put your blankie in the dryer just before chilling time and it will be nice and warm. If all that fails come out here and at 4PM I will set you outside! Hope you find some answers.
Needing more help/answers tonight.
First, Melinda….thank you, but right now, I feel far, far from strong. I’m feeling very lost and scared. Thank you for sharing about your weight gain and leg swelling. It helps to know that someone else had that as well. I”m assuming that they didn’t have any answers for that for you? I got the answer back from the thyroid test and apparently it was normal. The weight gain…much as I hate to think of doing it over again….I will lose the same pounds I lost over the past two years….but the edema has me worried…and it’s uncomfortable
Second, Porter…..so good to hear from you…..and glad to hear that you are starting to feel like you again. Also thanks for the idea of a reduced dosage of the chemo. I will bring that up next Wednesday if it looks like the numbers are in range. I’m very worried about them dropping again as much as they did this last round.
Okay….so here is the problem. I had hoped to be feeling better…that the transfusion would
fix “everything”. I just got done dry heaving again….and had been queasy off and on late afternoon. The last chemo was the gemzar on July 30th. The most worrisome thing though has been this continuing chills that I get every afternoon about 4 pl.m….that last until I go to bed. I chill for 5-20 min…then get warm…temp goes from 97.4 or so up to 98.8 (but usually 98.2)…my face gets warmish….and then bham…it’s cool again and the temp is again in the 97s. It’s very uncomfortable and lands me in the recliner with a blanket on all evening. Is this being caused by the hemoglobin being 9.5 . It was 7.2 when I got the two units of packed red blood cells, …which then raised to 9.5. But, that is still far under the low end of normal….being 12, I’m considering going into the ER again this weekend…….but they actually told me that 7 was the threshold for transfusion…..but my oncologist said to transfuse….so they did. I “feel” like maybe I’m a little more short of breath again. How dang long do the effects of the chemo last in knocking down hemoglobin?Help.
Hi Julie, I understand all you are going through. I had my last infusion back in the beginning of June, and now just starting to feel a bit better (having more energy, counts are slowly bouncing back to normal, etc) It really takes a toll on our body as you already know
On top of the surgery you had before this as our bodies are also trying to heal from that. It sounds like you are starting to feel better. My platetles, hemoglobin, and hematocrit were mostly affected during my Gemox regimen. I too debated for a bit whether or not to complete my last infusion. On a couple of occasions due to my side effects and blood work, they did reduce my dose on 2 different occasions. Have you or your team thought of that? Could that be an option? Hugs to you.
PorterDear Julie,
Wow girl…..you have been through the ringer. I sense how strong you are and I personally think you are making the right decision to sit out the chemo one more time.You brought back some dreaded memories for me today….the weight gain….I literally gained about 25 pounds on the gem/cis combo as well…..the swelling…..my feet and legs used to swell quite a bit as well, especially in the summer heat. I absolutely DO NOT miss that chemo cocktail!
Hang in there….you are amazing and strong and I am praying for you!!
Melinda B.Kris…and All,
Kris….I know…it seems like I’ve had more than enough of the side effect crap. Even my psychologist told me yesterday that I’m in the upper 5 % of people (she specializes in oncology patients) she’s treated who have had a very large number of very tramautic things happen to them …and in a particularly short time. We’ve had stuff like this our whole married life though….and often have said, “Whatever it is, we’ll get the worst case scenario.”
I went to my chemo apt today as scheduled, mainly to get my blood labs done to see where I’m at as of now after the blood transfusions and a few days past the last tests done in the ER on Saturday.
My hemoglobin is now 9.5…up from 7.2. I have quite a bit more energy, though I still don’t feel like myself….but then, haven’t felt like myself for quite a while….the hemoglobin has been in the anemic range for some time.
The platelets bounced up from 50 to 123ish….so now they are in, just barely, the normal range.
The kidney function test was at 1.5 on Saturday and today is was 1.2. The high end of normal is .9-1….so it’s not that far out….and at least now trending back the right direction. It was not doing that the last several weeks….it was trending further and further away from normal. The Mayo oncologist did say though, that unless the kidney function was in the normal range, I should hold off on chemo.
Even though my local oncologist said it was okay to do chemo, I stuck with my decision (and Mayo directive_ to sit out a week and give my body some time to rebound a little more. I’m guessing that the numbers will be better yet next week and if so, then I will start round 6 and push on through it. If the kidney number is just say, a tenth of a point away from normal, I think I’ll go ahead….because at least it would show that the kidneys were trying to recover. I’m hoping of course, that the kidney numbers drop further than that….and they have a whole week to do that…with me drinking a lot of fluids.
I was able to walk farther today without a lot of shortness of breath. I still had some…but not the gasping for air…bent over and afraid like last week. I’m still having problems with chills….no temp….even though I suddenly feel warm after a chill lasting anywhere from 3 min to 20 min. We’re assuming that the chills with no temp are associated with the anemia that I still have with the hemoglobin at 9.5. I would have thought it would have gotten some better though…but instead, I’m now wearing a spring coat in the house tonight to stay warm enough and stave off the chills. Another cause for the chills could possibly be my thyroid suddenly shutting down…which would also explain the 25 pound weight gain during chemo….with about 12 of those pounds going on in the last two weeks. The swelling in my legs has also not subsided. That is really driving me nuts…..esp the leg that had the blood clot and is susceptible more to swelling. It had gotten to the point for a while…maybe the month of July, that it wasn’t swelling much anymore…enough to put on a compression, but it was comfortable. Now, it’s even swollen in the foot area and toes…and all the way up to my knees and maybe further. The other leg swells, but not as badly. I asked for a TSH and T4 Thyroid test to be run today…which they did…so I hope to get that answer back tomorrow. Otherwise…I don’t know what is going on….if the hemoglobin is maybe still too low and is still straining my heart?…..and that is what is causing the swelling in the legs. In that case…..I would wonder why not transfuse more blood.
So….this will be a week of drinking lots of fluids….trying to keep my legs elevated when possible….and enjoying a bit more time out and about. I am still dry heaving every morning (and sometimes before bed), ….which perplexed the oncologist…..because she said it shouldn’t still be happening this far out from the last chemo. Whatever…it’s still happening.
Julie T.
Julie –
Seems like you just can’t win. You need to remember that it’s not a race to see if you can have every side effect that the chemo produces.Technically Mark missed two of his twelve doses of Oxaliplatin when we were doing just chemo. He had anaphylaxsis 15 minutes into his 10th dose so they stopped and then infused dose 11 really slow and he did fine but 15 minutes into the last one he got into trouble again. They offered us two doses of cisplantin to make up for it and he opted not to. Felt like almost 12 was good enough.
You just have to decide if the possible good effects out weight the know bad effects of the chemo. I know you will make the best decision for you.
KrisV
Julie please, do not worry at all about feeling guilty about taking up storage space on the website! We’ll just have to keep on adding extra space on the site for everyone’s posts anyway over the years and I am sure that Rick is the man to sort all of that out each time, go Rick! Writing things down certainly seems to help you out with everything and that is good, and look at it this way as well, not only will your posts help others here on the site also, they will also help out the tons of lurkers who read the posts but are not members so it’s a win win in my book!
Yes my mum has had 3 heart attacks now and no more please thank you very much! The docs said that the pneumonia just helped heap extra pressure on her heart which was not in the greatest condition anyway and caused the attack. She is on the oxygen at home now for 15 hours a day and it is not really for her breathing although it does help with that, but it is there to take the pressure off of her heart
Yes you def need to keep an eye on the swelling and that is something that my mum gets as well. But she gets it more in her feet and ankles but my dad had it in in his legs as well. He took meds for it and my mum did too for a while.
And what a good friend you have bringing you all of that food, nice!!!
Hugs,
Gavin
Julie….so sorry for chiming in so late. I just now had internet access again and here are your postings. I hope and wish for everything to be turning the corner for you and sending tons of love your way.
Hugs
MarionLainy…yes….I do feel better….like a fog has lifted is the only way I can describe it. All the shortness of breath isn’t gone….and might not leave…depending on how the two units of blood did to raise my hemoglobin. I was talking with my mother in law tonight…to fill her in on what happened over the weekend….and to check on her as she has some medical issues also. I noticed that after I had finished telling her about what led up to the transfusions, I felt slightly winded. Okay…no jokes please. I type like I talk…and talk like I type…..long winded I guess.
But yes….at least I don’t have the awful feeling that I can’t get enough air….and….I just realized that I haven’t fallen asleep all day…..except for about an hour during the transfusion after I got Benedryl (in case of a reaction to the blood). That hasn’t happened for a long time.
Julie T.
Sounds yummy to me, what a nice friend! You sound like you are doing better to me and that is good to read! Enjoy your meals!
Lainy, Thanks for the suggestion about the mask. If there is any doubt about his health….the kids haven’t brought him over since I the CT that showed the tumor. There have been a couple times that it was questionable…but the poor little guy has inherited bad seasonal allergies from both mom and dad….both sides of the family are cursed with stuffed up noses year round. So, sometimes it’s hard to know which is going on. Hopefully, I will have better blood counts by the time the cold and flu season is upon us again …though I still plan to be careful. Facetime on my ipad has been a wonderful thing….as we’ve been able to “see” each other through all of this even when someone has been sick. It doesn’t take the place of a real hug…or little one sitting on your lap…but it’s pretty good. The wonders of technology.
I have a friend bringing over supper tonight…..enough for leftovers…and apparently another dish ready for us to put in the oven after that (I assume it’s something to freeze). She had volunteered this before I ended up at the hospital…..and apologizing for not doing “something” sooner. Sigh. Somehow though, it’s people like she is…..who do something special…and they’re the busiest people you know. They just always seem to find time to do something extra. Anyway…no cooking for us for a few days.
Oh…she just came….sloppy joes/buns, lettuce salad, potato salad, beef stroganoff (enough to feed an army…going into the freezer for later this week) sweet corn on the cob, cantaloupe , and strawberries with angel food mini cakes. Good heavens…..There’s enough here to last us the entire week and next week for just the two of us.
Old time friends are good to have.Gavin, I feel guilty sometimes, taking up the storage space on the website, but yes, I have found many times in the past, that writing things down to someone else, has helped me think things through in a more objective manner. I love the mysteries of our family history/genealogy and it is so true of that. However, it is one thing to be objective about genealogy…and quite another about a life and death decision.
It’s interesting that you mentioned your mom’s pneumonia and causing her 2nd heart attack. I had not heard about that being connected, though now that I think about it, I don’t know why not.
I have to be especially careful also with the swelling in my legs…and nailing down the cause…because I had a heart attack in 2002…one artery 100% blocked….lucky to be here. But, the low red blood cells due to chemo (if the doctor is guessing right…and I assume he is) cause a stress on the heart…which in turn causes swelling in the legs. Of course, damaged kidneys can also cause swelling in the legs, but they don’t think my kidney numbers are bad enough to cause my leg swelling. I do NOT want another heart attack …though honestly, it was a lot simpler to go through than this cancer crap. I suspect that in a few days to a week, my leg swelling will go down….as long as the red blood cells they just transfused hang around.
And yes, my husband did go for a bike ride…and yes, I did go out in the car. It wasn’t much….just to a toy consignment store to drop off something the little grandson didn’t need anymore to resell. It wasn’t a far walk….maybe 50 feet total….but at least I was out and it felt good to not be tied to home.
Thanks for that Julie and glad to hear your husband say that you are perkier today, that sounds good to me! Perky must be good if he is away out on the bike for a ride, and if you are thinking of going to the store too! And yes, pneumonia, hmmm, big grrrrrr to that me says! Pneumonia caused my mums second heart attack and she really has to watch out for that with her copd. She was in hospital for quite some time with all of that, one of her many bouts of being in the hospital for quite some time actually and between her and my dad, I must have been up at Ninewells hundreds or times these last years!
As for the chemo, it being a clear cut decision and knowing all of the right answers, I sure wish that we all knew the right answers and the right decisons to make all of the time. Life would be so much easier if we did know all of that wouldn’t it! I know that whatever decision you make on all of this it will be the right decision for you. Fingers crossed for you that the blood transfusions start to make you a lot better very very soon!
Hugs,
Gavin
PS – and glad as well that coming here is helping you think things through as well, even if you don’t get all of the answers.
Julie, you are not being “defeated” by taking a little rest. By goodness, look at what you have been through. I do have a suggestion about when you are with the little munchkin. Wear a surgical mask. I know Teddy’s Granddaughter is always getting sick from the 2 1/2 year old as he is in day care. Hope you start feeling better quickly and somehow all the wrinkles will be ironed out!
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